Tag Archives: cancer survivorship

“I care for myself. The more solitary, the more friendless, the more unsustained I am, the more I will respect myself.”

— Charlotte Brontë, Jane Eyre

One thing that’s become evident to me as a cancer survivor is that we all respond to cancer differently. Our response depends primarily on our own personality and past life experiences. How we deal with a life-threatening illness will differ according to our personal values and may also be connected to how we have responded to crises in the past. It’s also important to note that we each have our own toolbox of resiliency to work with. Cancer is extremely personal, so our response tends to be personal too. This has definitely been my experience as an ovarian cancer survivor. I’ve learned a great deal about who I truly am as a result of my emotional and psychological reactions to having gynecological cancer. It’s been a gradual process during the course of which I’ve become more nurturing and accepting of myself.

Posing with my mom and brother Ray at the annual Ovarian Cancer Canada Walk of Hope. The nationwide event is held each September.

The moment I was diagnosed with cancer I entered a psychological realm where wanting to know everything about the disease alternated with fear and aversion. I realized it was solemn news when a week after my hysterectomy the phone range and my surgeon wanted to see me immediately. As I sat in my gynecologist’s office on that autumn afternoon, he was thoughtful enough to provide me with my own copy of the surgical pathology report, a crucial document outlining the specifics of my uterine and ovarian cancer. He estimated that it would be a couple of weeks before I could have a consultation with a team of oncologists at the Tom Baker Cancer Centre. In the coming days I developed a love-hate relationship with the information that I had been given. Numb and in shock, I read over the three-page report repeatedly, meticulously researching the strange and frightening medical terminology.

Simply explained, every cell in the body has a tightly regulated system that dictates when it needs to grow, mature and eventually die off. Cancer occurs when cells lose this control and divide and proliferate indiscriminately. Theories, treatments and possible explanations for cancer are abundant. They range from the factual or medically proven to the bizarre, absurd and downright dangerous. Regrettably there are a few contemptible individuals who knowingly try to profit from cancer patients or exploit our physical, emotional, and psychological needs. When I access printed materials or the abundance of online resources that are available, I remain highly selective. When I started treatment I immediately came to appreciate that the most specific and reliable information was coming from my oncologist and the incredibly skilled medical professionals on my cancer care team.

Above all, as time has passed I’ve come to trust myself, I feel like the foremost expert on my body and the disease that’s invaded it, Decisions concerning my treatment have always been made in conjunction with my oncology team, however most final verdicts rest with me. For example, in the fall of 2012 I made the excruciatingly difficult decision to forego treatment with radiation, opting for observation instead. The risks of pelvic radiation include the possibility of rectal bleeding; even worse, some patients will experience a bowel blockage or a permanent change in bowel or bladder habits after their treatments are finished.

For most cancer patients the benefits of undergoing radiation outweigh these serious risks. But due to my personal medical history it’s almost certain that it would have posed a substantial danger. The radiation oncologist informed me that due to my previous bowel blockage during chemotherapy the possibility of severe complications occurring would be much higher than average. Besides, I was undeniably exhausted from three consecutive abdominal surgeries in addition to five cycles of carboplatin, at the time I felt I could endure little more.

Finally, no one has the right to tell you how to respond emotionally to your cancer or to lecture you about how you should live your life after a diagnosis. Early in my cancer journey I was confronted by a couple of individuals who felt that I should not allow cancer to change my life. How could I have not changed? I’m not going back to the way I was before I had cancer. I see that as a waste of all that I have been through. As a cancer patient I’ve searched for kindness and compassion from my family, friends and health professionals because that’s what I’ve always done when I’m faced with life’s most difficult situations. I believe that I should be able to express my emotions without being judged by others, so naturally this was my philosophy when I got cancer. I sometimes struggle with fitting in and belonging, so I’ve become involved with supportive organizations such as Ovarian Cancer Canada and Wellspring.

sur•vi•vor (sərˈvīvər/) noun — A person who is able to live their life despite experiencing difficulties.

It’s been over six years since my cancer diagnosis and there are still times when I ask myself soul searching questions about my disease. A lot of the issues I’ve been thinking about lately concern the terms that we use when we talk about cancer, take survivor and survivorship for example. Although these expressions seem to be embedded in the cancer lexicon, there is still confusion regarding their meaning. For instance, when exactly did I become a cancer survivor? Who is considered to be a survivor? What criteria can or should be used to determine if someone is in this category?

“Cancer survivorship begins at diagnosis and covers the physical, psychosocial, and economic issues of cancer, from diagnosis until the end of life.” As a woman who has fought gynaecological cancer, I’ve come to accept this commonly used description of cancer survivorship, I accept the all-encompassing notion that’s presented in this definition because cancer does impact every single aspect of a person’s life. In retrospect, I also believe that my survivorship began that moment in my gynecologist’s office when he told me the devastating details of my pathology report. Simply being diagnosed with cancer made me a survivor, from this perspective I didn’t have to wait until after I had completed almost a year of treatment. Before the surgeons at the Tom Baker Cancer Centre cut into my body and before the first drop of chemotherapy solution ran ominously into my veins I was already a survivor in the eyes of the cancer community.

As the well-known gynecologic oncologist Dr. Rick Bouley explains, the commonly accepted definition of “survivor” within the cancer community is simply a person diagnosed with cancer. So once the terrifying sentence, “I’m so sorry, the biopsy shows that you have cancer,” leaves your doctor’s lips and pierces your soul, you begin life anew as a cancer survivor. I remember my first chemotherapy treatment and how insecure I was, part of me felt like I was less of a “survivor” than some of the other cancer patients who had been fighting the disease for years. I can laugh at the situation now, but I was rather worried that some of the veteran chemotherapy patients might be able to tell that I was a newbie. They would ascertain that I looked too healthy and had all of my hair! When I arrived for my first session, I noticed that the people around me seemed to have many types and stages of cancer—what is more, a good number of them exhibited full heads of hair.

Finally, the notion that some people seem to have, that disease outcome (whether you live or die) determines if you are a survivor is erroneous. I’m still inspired by the words of the late American sportscaster Stuart Scott. “When you die, it does not mean that you lose to cancer,” he said. “You beat cancer by how you live, why you live, and in the manner in which you live,” There’s a controversial, yet commonly held, view that a cancer diagnosis is a war or a battle that must be won. The problem with this philosophy is that it places the burden almost entirely on us patients. If we die or if our cancer ultimately recurs it’s because we didn’t think positively enough or we weren’t strong enough to will it away.

In my opinion, a person’s cancer outcome will depend almost exclusively on medical science. If someone’s cancer progresses, it’s a failure of the medical treatments that are currently available, plain and simple. I know of plenty of women who’ve succumbed to ovarian cancer and they were among the bravest and most resolute people on Earth. Ultimately, they are no less survivors than those of us who are lucky enough to be “cured” or to enjoy decades of remission.

I’ve been thinking a lot lately about the controversial, yet commonly held, notion that a cancer diagnosis is a war or a battle that must be won. Doesn’t this philosophy place the burden almost entirely on us patients? If we die or if our cancer ultimately recurs it’s because we didn’t think positively enough or we weren’t strong enough to will it away. I know of plenty of women who’ve succumbed to ovarian cancer and they were among the bravest and most resolute people on Earth. In my opinion, a person’s cancer outcome will depend almost exclusively on medical science. Of course, there are always certain unknown factors or variables—what we sometimes refer to as chance. I’ve learned to face the reality that much of what occurs in terms of my cancer is beyond my individual control, no matter how strong or determined I try to be.

When I was first diagnosed, an iconic image associated with cancer kept going through my mind. I closed my eyes and I could see one of Canada’s most legendary and revered figures, Marathon of Hope runner Terry Fox. I can vividly remember Fox from the photographs and TV clips of my early adolescent years. He continues to represent a certain type of heroism to me, and his legacy offers proof that one person can change the world in the face of tremendous adversity. Nevertheless, it was beyond the young Fox’s control, that his cancer returned and he was forced to stop his Marathon of Hope. In the end, he received multiple chemotherapy treatments and even experimental interferon treatments; in spite of everything, the disease continued to spread. Terry Fox died on June 28, 1981, with his family by his side. My point is that even the heroes among us don’t have it within their power to simply will cancer away.

Well-known screenwriter and producer Josh Friedman was recently diagnosed with kidney cancer, he writes eloquently about the warrior mentality in a personal essay he authored for Time magazine. “Cancer doesn’t give a damn how tough you are,” he argues. “Cancer doesn’t care if you stared down the North Koreans like John McCain, or won the Tour De France like Lance Armstrong.”

Friedman is adamant that patients shouldn’t feel a burden to be brave or to be victorious in some kind of ongoing battle with their disease. “You don’t battle cancer. You don’t fight it. If cancer wants you it sneaks into your room at night and just takes you. It doesn’t care if you’re John Wayne or John McCain.”

“The tough guy narrative is seductive,” Friedman reminds his readers. “It suggests we have control over our fate, that we can will cancer away. These are lies we tell ourselves. And for some patients that’s helpful. It gets them through the day. For them, it’s a useful tool. But courageousness is a standard that no sick person should feel like they have to meet.”

One popular theory that makes me especially angry is one that links specific personality types to an increased risk of getting cancer. “The Type C Connection: The Behavioral Links to Cancer and Your Health,” argues that the personality traits of some people make them more prone to cancer. Typically, “Type C” individuals are the antithesis of warriors: They are unassertive people-pleasers who repress their emotions.

Modern researchers have largely debunked the idea that negative emotions heighten an individual’s susceptibility to developing cancer, or that maintaining a positive outlook can stave off cancer’s return or delay its progression. I agree with the majority of oncologists and cancer researchers who argue that there is no evidence to support the idea that personality can influence the growth of malignant cells. There is no cancer for which attitude can halt the progression of disease. A handful of studies have found that women who are anxious or depressed are more likely to suffer recurrences of breast cancer and die from the condition. However, it’s obviously true, and understandable, that dying women are more likely to be anxious and depressed.

A recent article in the Washington Post bore the straightforward headline: “It doesn’t take a warrior to beat cancer. It takes a treatment that works.” The author, Steven Petrow, discusses his opinion that people shouldn’t think that their cancer outcome is primarily in their hands. If someone’s cancer progresses, it’s a failure of the medical treatments that are currently available, plain and simple.

In just a few weeks I’ll face an emotional and bittersweet milestone, the fifth anniversary of my cancer diagnosis. Above all I’m grateful that I made it through the grueling medical treatments that I had in 2011 and 2012. There were moments when I felt so sick and physically weak from surgery or chemotherapy that I was afraid I might die. I thank God for my oncology team; they were always there and never stopped encouraging me. It turns out they were right to be optimistic about my prognosis, or at least to be confident that I could achieve remission. I’ve been in remission from ovarian cancer, a disease that many refer to as the silent killer of women, for four years now.

As my cancer anniversary approaches, I’ve been thinking a great deal about how much things have changed for me. Personally, I’ve discovered that physical attractiveness, material possessions and social status all matter less to me now. These things frequently seem to fade into irrelevance as I confront a life-threatening illness. Meanwhile, my relationships with other people, discovering ways that I can make a difference in the world and learning more about the essence of who I am are currently at the forefront of my agenda and have an extremely high priority to me. Most of all, I’m aware of time and of the immeasurable value of each day that I’m alive. Here are some powerful meditations that I though I would share.

“I ask you to imagine that there is a bank account that credits your account each morning with $86,400. It carries over no balance from day to day. Every evening the bank deletes whatever part of the balance you failed to use during the day. What would you do? Draw out every cent, of course.

Each of us has such a bank, its name is time. Every morning, it credits you 86,400 seconds. Every night it writes off at a loss, whatever of this you failed to invest to a good purpose. It carries over no balance. It allows no overdraft. Each day it opens a new account for you. Each night it burns the remains of the day. If you fail to use the day’s deposits, the loss is yours.

There is no drawing against “tomorrow.” You must live in the present on today’s deposits. Invest it so as to get from it the utmost in happiness and health. The clock is running. Make the most of today.”

— Marc Levy, French novelist

“It’s being here now that’s important. There’s no past and there’s no future. Time is a very misleading thing. All there is ever is the now. We can gain experience from the past, but we can’t relive it; and we can hope for the future, but we don’t know if there is one.”

― George Harrison

“You must live in the present, launch yourself on every wave, find your eternity in each moment. Fools stand on their island of opportunities and look toward another land. There is no other land; there is no other life but this.”

— Henry David Thoreau

In the film Dead Poets Society Robin Williams plays an unconventional English teacher named John Keating. In one of the movie’s most memorable scenes the teacher stands with his students gazing at some vintage school portraits. As they view the photographs of previous generations, this is what Keating tells the group of young men in his class:

“They’re not that different from you, are they? Same haircuts. Full of hormones, just like you. Invincible, just like you feel. The world is their oyster. They believe they’re destined for great things, just like many of you, their eyes are full of hope, just like you. Did they wait until it was too late to make from their lives even one iota of what they were capable? Because, you see gentlemen, these boys are now fertilizing daffodils. But if you listen real close, you can hear them whisper their legacy to you. Go on, lean in. Listen, you hear it? — Carpe — hear it? — Carpe, carpe diem, seize the day boys, make your lives extraordinary.”

Illness is the night-side of life, a more onerous citizenship. Everyone who is born holds duel citizenship, in the kingdom of the well and in the kingdom of the sick. Although we all prefer to use only the good passport, sooner or later each of us is obliged, at least for a spell, to identify ourselves as citizens of that other place.

— Susan Sontag

As a cancer survivor I often feel like I’m an outsider trying to fit into the world I once occupied, the world of the healthy and cancer free. My cancer diagnosis has caused me to view the world differently—for example many things that once seemed enormously important have lost significance and become almost trivial. I’ve discovered that physical attractiveness, material possessions and social status all matter less to me now. Not surprisingly, these things frequently seem to fade into irrelevance as I confront a life-threatening illness. The realm of cancer is teeming with complex, and sometimes even existential, topics. Healthy individuals are able to carry on with day-to-day trivialities, but I’ve had to stop in order to reflect on some of the deeper questions that others have the luxury of ignoring. Since being informed that I have cancer I’ve discovered that I can no longer defer life’s existential questions. Why am I here? What is the purpose of my life? Who am I?

Susan Sontag was an American writer and commentator on modern culture. She published essays, novels, and short stories. Sontag explored society’s attitudes toward cancer in her work Illness as Metaphor.

Regrettably, I’ve learned that our society still has misperceptions about chronic illnesses, such as cancer, and that there is still indignity for those of us living with such conditions. This legacy isn’t surprising considering the profound fear, confusion and stigma surrounding cancer for centuries. Until relatively recently the word was hardly spoken in public or said out loud. In 1978 Susan Sontag wrote the classic, and still controversial work, Illness as Metaphor. A breast cancer patient herself when she was authoring the book, Sontag argues that the metaphors and myths surrounding certain illnesses add greatly to the suffering of patients and frequently inhibit them from seeking proper treatment. By demystifying the fantasies surrounding cancer, Sontag strives to show cancer for what it is—just a disease. Cancer, she argues, is not a curse, not a punishment, certainly not an embarrassment, and it is often highly curable if good treatment is followed.

It’s no wonder that some cancer patients still choose to avoid revealing their illness to others. Some don’t want to be viewed differently. They just want to be normal, not defined by the disease. Others may choose to stay silent to protect their privacy and emotional stability. When the news broke last month that musical legend David Bowie had died at the age of 69 after an 18-month battle with cancer, fans around the world expressed not just grief but shock. Despite more than five decades on the world stage, under the glare of a public spotlight, the rock-and-roll icon managed to keep his cancer journey a secret from fans and friends alike, sharing it only with a handful of people in his inner circle.

Sometimes when people are diagnosed, they receive a lot of advice from friends, family members or others—virtually everyone has known someone with a form of the disease. Often the intentions are good, but the stories can be scary and frequently make a patient feel worse. When a sizeable network of people learned that I had been diagnosed with uterine and ovarian cancer, I received information that was both inappropriate and that increased my anxiety. I was inundated with everything from holistic remedies for cancer to stories about aunt so-and-so’s bowel cancer. Keeping a diagnosis a secret keeps these kinds of opinions away.

Ultimately when my cancer became common knowledge, there was another aspect that I found emotionally unsettling. The moment family members, friends and acquaintances learned about my illness, all of a sudden, it wasn’t about me anymore. To a large extent it became about trying to make sure my mother, who was in the role of my caregiver, was okay. She had a reliable network that was concerned about her and that wanted to make certain that she wasn’t becoming too overwhelmed or too upset. I don’t resent the support that was provided to my mom, but at the time I remember being a little envious. It made me more keenly aware that I don’t possess a large number of close friends myself; it also became slightly harder for me to focus on my own emotional issues and specific needs.

As I’ve mentioned before in this blog, self-assessment or the need to reprioritize your life is a virtually inevitable part of being a cancer survivor. This month marks the fourth anniversary of my diagnosis. My gynecologist informed me of my disease on November 3, 2011, and this will always remain one of the most significant days of my life. How can one explain such a profound and life-altering event to a person who has always been relatively healthy? Some psychologists and experts have observed that cancer patients divide their lives into two parts or that we are figuratively born twice.

Since the beginning of my cancer experience there have been moments of epiphany and numerous opportunities for personal reflection. I want to share a few of the survivorship lessons that I’ve come to terms with over the past four years. According to professionals in the cancer field, survivorship is living with and beyond cancer. Survivorship covers the physical, psychosocial, and economic issues of cancer, from diagnosis until the end of life. This is some of what I’ve learned so far.

If something isn’t going to matter or have any impact five years from now, I probably shouldn’t spend time worrying about the issue. Not until my diagnosis with cancer did I realize how much time I spend worrying about the future or regretting the past. I believe more than ever in the importance of focusing my attention on the present. I can live each moment only once, so why waste that precious moment in a state of self-induced stress or anxiety? As for the direction of my life, I’ve ultimately gained a clearer perspective about what my priorities are—I’m proud of my ability to concentrate on the values and relationships that I know are the most significant.

I tend to enjoy my own company more than I enjoy being in groups or socializing with other people. I’ve accepted that I’m an introvert and there’s nothing wrong with the way I am, it’s not necessary for me to apologize. I lament the fact that my personality type is so frequently misunderstood and that introversion is often confused with being shy. Shyness is the fear of negative judgment, and introversion is a preference for quiet, minimally stimulating environments. I become the most upset when I’m accused of disliking people in general and of lacking the skills to be an extrovert. The truth is that introverts comprise at least one quarter of the population and we continue to make our own unique contributions to society.

It’s counterproductive to surround myself with people who don’t want to be with me or don’t value me. I’ve reached a point on my cancer journey where I find it’s no longer necessary to impress anyone. If they like me the way I am, that’s fine. If they don’t, it’s their loss.

I’ve definitely developed zero tolerance for having toxic people in my life.

Some Signs of a Toxic Person

Nothing you can say or do is good enough.
They comment on the smallest flaw or perceived imperfection.
They drag up your past and won’t allow you to grow or be different.
They act like they are fabulous and never make mistakes.
They leave you feeling guilty and ashamed of who you are.
They are critical, controlling and don’t think about your needs.
They leave you feeling beaten, wounded, battered bruised and torn.
They violate your boundaries and never respect no.
They don’t care about your feelings and they like to see you suffer.
It’s always about them and what they think and want and feel.

I never use the phrase someday and I try to avoid talking about future plans in vague or uncertain terms. Most people I know take the future for granted and think of it as something that will always be there for them. In 2012 I spent over a month and a half on Unit 42 at Calgary’s Foothills Hospital. This women’s cancer ward is predominately a place of bravery, triumph, heartbreak and tears. When I looked into some of the other patients’ eyes, I could see them begging for a future, and I understood that they would do almost anything for the gift of just a few more months in this world. As a cancer survivor I’ve discovered how precarious tomorrow really is and that you can’t always depend on someday.

I’ve learned it’s not wrong to put my own needs first and that it’s essential to take care of myself physically and emotionally. After undergoing five cycles of chemotherapy and three cancer surgeries within eight months—I’m finally treating my body with the respect it deserves. We’re all pressured daily to move faster, do more, sleep less, earn more money and obtain that promotion. Within the cancer community, I hear the term “self-care” a lot. I don’t know if I’m fond of the expression, but it’s a concept I believe in strongly, I consider it particularly relevant for women with cancer. As women we are socially encouraged to give everyone else our time, energy and attention—but often feel conflicted or guilty when we stop long enough to take equally thoughtful care of ourselves.

In my introductory blog post, Survivorship 101, I defined the concept of cancer survivorship. Survivorship refers to the physical, psychological, social, and economic issues of living with cancer, from diagnosis until the end of life. In this post I would like to delve deeper into some of the social and psychological aspects of having cancer. For example, a major cancer diagnosis often causes you to view the world differently—things that once seemed enormously important may lose significance and become almost trivial. Personally, I’ve discovered that physical attractiveness, material possessions and social status all matter less to me now. These things frequently seem to fade into irrelevance as I confront a life-threatening illness. Meanwhile, my relationships with other people, discovering ways that I can make a difference in the world and learning more about the essence of who I am are currently at the forefront of my agenda and have an extremely high priority to me at the moment.

Like many people dealing with cancer I’ve sometimes felt isolated from those not going through a similar experience. Relatives, friends and acquaintances mean well, but they are unable to fully empathize or to understand certain aspects of what I am going through. Many cancer survivors will attest to the fact that there are times when they are surrounded by people and still feel very alone. This type of emotional isolation occurs when you discover that you can no longer relate to people in the same way you did before. Things that were important to you in the past are no longer important to you, and your friends and family don’t understand why you have changed so much. I’ve noticed that the books I read, the movies or television that I watch and the activities that I like to participate in have all changed a fair amount since my cancer diagnosis, so have the topics that I prefer to discuss. This transformation has affected my personal relationships and how I feel about those closest to me.

According to the Alberta CancerBridges team, such deep-seated feelings of isolation have been well documented in the cancer care literature. There is even a term that has been created to describe this experience—it’s known as survivor loneliness. Last summer I watched a rare long-term survivor of ovarian cancer address the crowd at an Ovarian Cancer Canada fundraiser. I admire her ability to speak eloquently in public about her decade long struggle. Throughout her speech she had nothing but praise for her friends and family, I could sense that she is profoundly grateful for the unconditional love and support that they have given her over the years. But paradoxically, the former nurse also characterized her personal battle with cancer as a “long lonely journey.” Survivor loneliness can take many forms and occur for a number of reasons. It’s typically felt as a profound sense of isolation from the people around you. As one battles cancer, this sense of isolation can arise from a feeling that you are alone in your awareness of mortality.

Since my cancer diagnosis two years ago, I’ve been required to think about my mortality. I’ve also had to tend to many practical matters that I didn’t anticipate that I’d have to deal with until I was much older. While everyone around me carries on with their lives, I’ve had to stop and reflect on some of the deeper questions of life that others have the luxury of ignoring. Individuals diagnosed with cancer often find themselves contemplating existential questions. Why am I here? What is the purpose of my life? Who am I? These issues are brought to the forefront of your mind when facing a potentially deadly disease. Sometimes I feel frustrated by the fact that most things that my friends and family care about seem fairly trivial to me now. For example, they got cut off in traffic, they had a disagreement with a coworker or their favorite esthetics studio is getting ready to raise its prices.

Cancer experts and psychologists generally agree that the most effective way to combat isolation and survivor loneliness is to connect with other people who are undergoing a similar ordeal. There are numerous support groups and organizations throughout Canada specializing in the extremely complex social and emotional aspects of cancer.

Cancer shakes your illusions of immortality. It robs you of the sense of invincibility and innocence that once protected you. But what replaces that feeling is infinitely more valuable: a new awareness and a mature understanding of both life and death.

From Picking Up the Pieces: Moving Forward After Surviving Cancer
by Sherri Magee and Kathy Scalzo